Examples of Action

One children's hospital asks representatives from the Office of Health Equity to attend a PFAC meeting in the first quarter of every year to share hospital-level health equity data, strategic goals, and priorities. The PFAC uses this information to identify areas of alignment between PFAC interests and hospital health equity goals. PFAs then brainstorm opportunities to support hospital strategic priorities. During the meeting, PFAC co-chairs share what the PFAC has been working on with representatives from the Office of Health Equity, highlighting learnings and promising practices that could be implemented at a broader hospital level. The connection between the PFAC and the Office of Health Equity has also facilitated the inclusion of PFAs in hospital-level health equity work. For example, after learning more about the PFAC, health equity staff advocated for including PFAs on a workgroup overseeing the transition to a new electronic medical record (EMR) platform. PFAs provided critical input to ensure the new system was accessible and understandable for all patients.

The University of Rochester Medical Center (URMC) has a long history of working with specialty PFACs to learn from individuals who have experienced challenges in the healthcare system. URMC’s PFAC structure includes specialty PFACs for behavioral health, deaf, and transgender patients and families. URMC also undertook a multi-year process to develop a Black/African American PFAC. To create the group, URMC partnered with the Department of Equity and Inclusion and established a planning committee of paid consultants from the Black community, including community activists and patients and families who had reported negative experiences. URMC worked with these consultants to understand whether a specialty PFAC was the right decision and to identify what success would look like and how it should be measured. Ultimately, members helped develop a mission statement for the Black/African American PFAC that states the following: "Our mission is to hold the University of Rochester Medical Center (URMC) accountable to Black and African American patients and families to ensure that they consistently receive compassionate, person-centered care from a workforce that is culturally competent and responsive. Further, we aspire to serve and heal those who have been disproportionately affected by racism, poverty, and other forms of oppression. Building a culture of respect, safety, and advocacy for Black and African American patients and families will result in equitable patient care and positive experiences for all."

Further information:
URMC’s experiences are highlighted in a 2020 presentation titled Advisory Councils to Optimize Health for Transgender, Deaf, and Behavioral Health Patients and in an episode of the American Hospital Association’s Advancing Health Podcast titled Establishing a Patient and Family Advisory Council that Truly Reflects the Patients Served.

To address gaps in PFAC representativeness at a children’s hospital with a large Spanish-speaking population, the PFAC coordinator worked with Language Access Services to recruit Spanish-speaking PFAs. Initially, the PFAC coordinator added Spanish-speaking PFAs as members of the main PFAC. However, after participating in several meetings, Spanish-speaking PFAs provided feedback that the need for simultaneous interpretation during meetings created communication challenges. They also expressed a desire for dedicated time with other Spanish-speaking PFAs who understood and could speak to specific cultural issues. In response, the hospital created a separate Spanish-language PFAC. PFAs on the Spanish-language PFAC report that it is a welcoming, safe space that has enabled them to contribute to addressing gaps in family-centered, culturally congruent care. Projects have included:

• providing feedback on translation and interpretation services, including the need for more simultaneous services;
• identifying opportunities to improve communication with families that speak languages other than English, including the use of tablets or phones to translate non-medical interactions;
• informing improvements to the admissions process for Spanish-speaking families;
• identifying communication principles and specific behaviors that help build trust and connection with Spanish-speaking families;
• providing input for multilingual signage and the selection of diverse art and images that reflect the patient and family population; and
• participating in a Hispanic community resource fair, sharing information about services offered at the hospital that families and community members may not know about.

A suburban hospital learned that many local LGBTQ+ patients were traveling to get care at a hospital that patients felt provided more supportive and respectful care. Recognizing the need to address inequities in the provision of care, the hospital began identifying opportunities to improve care and services. As part of this process, staff reached out to local groups—including an LGBTQ+ elder network, teen center, and family support group—to set up meetings and ask for feedback about creating an LGBTQ+ PFAC. The hospital undertook a multi-step process to learn from LGBTQ+ patients and families how best to structure and recruit for the council. They formed an organizing committee that included community representation and worked with committee members to draft a mission statement and charter, clarify the scope and focus of the PFAC, identify potential initial projects, and set expectations for meetings. The committee developed recruitment materials with relevant messaging and highlighted the hospital's desire to learn and improve services for the LGBTQ+ community. Several years after its formation, the LGBTQ+ PFAC has contributed to multiple efforts, including participating in education and training for staff, advocating for the ability to record sexual orientation and gender identity (SOGI) in the electronic medical record, supporting community work geared toward at-risk LGBTQ+ youth, adding SOGI questions to the patient experience survey, and organizing a listening session to better understand the experiences and needs of the LGBTQ+ community.

A healthcare organization identified “increasing access to mental health services and ensuring that patients receive timely, effective, and appropriate care” as a strategic priority. To learn more about barriers to accessing and receiving mental health services, staff held discussions with a local behavioral health provider. Through these conversations, the healthcare organization learned that a church-based ministry for Black men was holding a series of community meetings about mental health. Staff from the healthcare organization reached out to the church-based ministry and were invited to attend the meetings to hear more about community concerns and needs for support.

A healthcare organization with a large Indigenous population held conversations with tribal elders to learn about community needs and concerns. These initial conversations led to an invitation for PFAC coordinators to attend a series of Talking Circles, a traditional Indigenous practice that encourages equitable sharing, truth-telling, and deep listening. Staff from the healthcare organization had the opportunity to hear from community members through health-focused Talking Circles held with Indigenous populations in eight communities.

To engage individuals who might not be comfortable attending PFAC meetings in a structured setting, one hospital started a community advisory council that meets outside of the hospital. The hospital began by forming a planning committee for the community council that included individuals from community-based organizations, the local health department, hospital staff who had experience working with community members (e.g., social workers and community health workers), and community members. The planning committee determined that the community advisory council would:

• include a core group of community council members to help plan monthly meetings and agendas;
• meet in locations convenient for community members (e.g., at community centers, community organizations, libraries);
• encourage but not require regular or consistent attendance at meetings;
• provide an opportunity for community members to share perspectives, experiences, needs, and concerns with the healthcare organization;
• include representatives from the hospital in a listening role and only with approval from community council members; and
• over time, transition to a council that is primarily led by community members while being supported by the hospital.

E-advisors are patients and families who work in a virtual environment, participating in activities such as answering surveys, responding to open-ended questions to provide insights, and reviewing and providing feedback on specific documents or materials.

One hospital with a large e-advisor program asks their e-advisors to complete a brief demographic survey, which helps them direct outreach to and get input from specific groups as needed. The hospital also has used the e-advisor program to develop relationships with PFAs from backgrounds underrepresented on the PFAC and explore their interest in serving on the PFAC. Because e-advisors go through minimal onboarding and training and have a lot of flexibility with participation (e.g., e-advisors can choose whether and when to engage and work on tasks as their schedule allows), the e-advisor program has helped improve advisor representativeness. The hospital is currently exploring ways to improve the ability to learn from patients and families who lack consistent and reliable access to digital technologies.

Discussion groups are short-term opportunities typically organized around a specific topic. In a discussion group, an experienced facilitator from the hospital or community asks tailored, open-ended questions to a group of 10 to 12 participants. The goal is to gain deeper insights from community members about their experiences and perspectives along with ideas for change. Depending on participants' preferences, discussion groups may be held in person or virtually.

As one example of how hospitals have used discussion groups, a hospital wanted to obtain feedback about the development of a patient bill of rights from individuals experiencing homelessness. Staff at the hospital contacted a local homeless shelter and worked with them to organize a discussion group onsite. In addition to providing insightful input for the patient bill of rights, the discussion group initiated an ongoing touchpoint between the shelter and the healthcare system.

Listening sessions tend to be conversation-based and more unstructured than a discussion group, although they may be guided by several overarching questions. They may also include more participants (20 to 25) and be slightly longer (60 to 90 minutes) due to the more free-flowing nature of the session. The goal of listening sessions is to create a safe space for community members to share honest experiences and perspectives and to ask questions to ensure the hospital fully understands their concerns and needs.

As one example, a hospital wanted to gather input from Spanish-speaking patients and families about the development of programs to address social determinants of health. The hospital worked with a Latino-led, Latino-serving community group whose mission was to strengthen the community and advocate for health equity. The community group advertised and provided space for the listening session. The hospital managed logistics, provided food, and worked with center staff to offer child care. The listening session was led by two staff members from the hospital who were native Spanish speakers and attended by several other Spanish-speaking staff members. These same staff members returned for a follow-up session at the community group to share how the hospital was working to incorporate information from the listening session into new and existing programs. Due to the success of the initial listening session, the hospital is exploring opportunities to hold regular listening sessions at the center.

Another hospital uses “Patient and Family Cafes” as a way to hold conversations with patients and families without the formal commitment of being an advisor. The cafes encourage open conversation and also provide an opportunity to obtain patient and family responses to specific questions. The cafes offer an alternative for advisors who may not be able to complete the more rigorous onboarding process required for full PFAC membership.

Sometimes, the best way to learn from families is through individual, directed outreach. This outreach may occur as part of a coordinated outreach program, or it may occur in response to comments or feedback about a specific experience provided by patients and families. For example, Children's Mercy Kansas City uses "family tracers," PFAs who talk with patients and families during their healthcare experience. The program was started as part of a coordinated effort to gather feedback, gain insights to inform hospital-wide initiatives and create opportunities for the hospital to learn from populations that were underrepresented on Children's Mercy's various PFACs.

Further information: Family Experience Tracers: Patient Family Advisor led interviews generating detailed qualitative feedback to influence performance improvement

A children's hospital with a strong culture of patient- and family-centered care (PFCC) works with PFAs to administer a social determinants of health (SDOH) screening questionnaire to families. As part of the program, specially trained PFAs contact families by phone before upcoming medical or therapy appointments. PFAs conduct calls in the family's preferred language to explain the purpose of the screening and identify potential needs related to housing, utilities, food insecurity, transportation, and education. PFAs reassure families that the questionnaire is confidential and that information will be shared with their provider solely to connect families with community resources. The completed questionnaire is saved in the patient's medical record for the provider to access during the appointment.

PFAs at an academic medical center partnered with staff to develop a health equity case for medical education. Spanish-speaking moms on the PFAC provided input to inform the development of a case that reflected challenges they had personally experienced. The resulting case focused on an eight-year-old patient who was bilingual and accompanied by her mother, who spoke only Spanish. The case has helped medical students learn about real-life challenges and identify language access solutions that address the needs of patients, families, and the medical team.

To improve patient- and public-facing materials, the PFAC coordinator at a children’s hospital initiated an active partnership between the PFAC and the hospital’s Public Relations and Marketing team. PFAs now review most marketing and communication campaigns to ensure they resonate with patients and families and represent the full range of patients and families served by the hospital. As an example of how this partnership has contributed to changes, feedback from PFAs led the hospital to undertake a project to develop a more representative library of stock photos.

Patient Experience staff at a children's hospital received feedback during family rounding that family members who spoke languages other than English did not know about amenities available to them during their child's hospital stay (e.g., food or laundry services). Patient Experience staff reached out to the PFAC coordinator to better understand how to communicate with all families about available amenities and supports. The PFAC coordinator formed a workgroup of PFAs from a variety of backgrounds who helped develop unit-based guides to amenities that were translated into multiple languages by Language Access Services.

Social workers at one hospital approached the PFAC for help providing comfort items for admitted patients and families. PFAs shared information about their experiences in the hospital and provided input for the development of culturally-responsive “care bundles,” which include a variety of hygiene items, including hair brushes and hair products for a variety of hair texture types.